Understanding the donor registration process

We made it clear in our post announcing our first donor registration drive, that the process of signing up is entirely painless. Further, the process of donation, though somewhat time-consuming, is fairly painless.

The process is similar to the apheresis procedure you may have seen for platelet donation.

Here is a short video that explains the procedure:

Note that you will only be called in for the actual donation if a match with a patient is found. This match may be found at any time in the future. Therefore, we require that you remain a committed donor till the age of 55.

If you have any doubts, you should get them clarified by the co-cordinator at the venue. Feel free to ask those doubts over email, if you prefer, at marrow@mumbaikar.me or over Twitter, at @MumbaikarME. If your doubts persist, we ask that you do not proceed with the registration at that point. We will conduct donor registration drives in the future and you can attend those when your doubts are clarified.

Donor Eligibility

In order to sign up as a donor, you must meet the following two conditions:

  1. You must be between the ages of 18 and 55.
  2. You must be void of
    1. Hepatitis
    2. AIDS
    3. Any other serious blood disorder

Donor Sign-up Process

When you come in to sign up as a donor, here is what will happen:

  1. You will attend an awareness session where the above video will be shown to you. After this, you can ask any questions you have. Only once all doubts have been clarified here, will you proceed to the next step.
  2. You will fill out an application form. Please ensure that your contact information is filled in with as much detail as possible, since it will be required for the registry to contact you quickly should a match ever be found.
  3. You will then read and, upon agreement, sign a form consenting to this process.
  4. Finally, we will proceed to the actual buccal swab, which involves rubbing sterile cotton swabs against the inner sides of your cheeks, at various points. This step should only take about a minute or two.
  5. Once you're done with the buccal swab, you will put the cotton swabs in an envelope (which we will provide) and give it over to us. We'll take care of sending all samples over to the registry for the HLA typing.

The Donation

Should a match ever be found (and I stress, this may happen at any time in the future, not necessarily right after the genetic typing is carried out), here is what will happen:

  1. You will be contacted and informed that a patient has matched you.
  2. There will be confirmatory HLA typing process, using a vial of blood from the donor. 
  3. A medical pre-screening test will be carried out for the donor. We will ensure that your health is taken care of- we do not want to improve the health of one person by degrading he health of another.
  4. You will be asked to come in for a growth factor injector (Neupogen) once a day, every day, for 5 consecutive days. This will boost the yield of peripheral blood stem cells by stimulating the donor's (healthy) bone marrow to produce more stem cells.
  5. On the fifth day, you will come in for an apheresis procedure, where blood will be extracted from one arm, be processed immediately to remove the excess stem cells, and be put back into your body through the other arm. This can take upto 4 hours, but is a fairly comfortable process (you will likely just be watching TV through all this).

Note that this is not at all like that painful classical bone marrow extraction process that you may have heard of. None of the donors who sign up will ever be called in for that.

To summarize, here is a slideshow that explains what we will be doing at the donor registration drive:

Click here to download:
DATRI_Pre_Donor_Drive_Oct2011.pdf (1.51 MB)
(download)

 

 

 

Introducing Amit Gupta

Amit Gupta is the founder of the popular photography site, Photojojo.

Two weeks ago I got a call from my doctor, who I’d gone to see the day before because I’d been feeling worn out and was losing weight, and wasn’t sure why.

He was brief: “Amit, you’ve got Acute Leukemia. You need to enter treatment right away.”

I was terrified. I packed a backpack full of clothes, went to the hospital as he’d instructed, and had transfusions through the night to allow me to take a flight home at 7am the next day. I Googled acute leukemia as I lay in my hospital bed, learning that if it hadn’t been caught, I’d have died within weeks.

This is Amit Gupta's account of how he was diagnosed with Leukemia.

Amit is of South-Asian origin. This means, the odds against him finding a match within the community are 20,000 to 1. South-Asians, unfortunately, also happen to be among the most under-represented communities in bone-marrow donor registries worldwide.

If you're in Mumbai and can come in to sign up as a prospective donor, you may quite possibly save his life. If not, you might save someone else's life. In the end, someone will win.

Signing up is as straightforward as rubbing cotton swabs against the insides of your cheeks. We will be hosting our first Mumbai donor registration drive tomorrow evening (Friday, December 8th) at Santa Cruz. Do come, do spread the word.

Amit Gupta Needs You!

Bone Marrow Donor Registration Drive

Short story: 

You know about blood donation, right? What’s rarer is bone marrow transplant, which is used to treat patients suffering from Leukemia. We are conducting a bone marrow donor education+registration drive in Mumbai. The venue for the first drive will be the Pinstorm office, Santa Cruz (West) and it will be held on Friday, 9th December, from 5pm to 7pm.

Long story:

We are all too familiar with blood donation drives. We see requests for blood donors regularly; they seem to appear every other day, if you use a portal like Twitter. And often, we donate blood at these requests, or at blood donation drives that are fairly common in the city, which happen every few months in our colleges, offices, even railway stations.

Once in a while though- we get that email. The one that solicits funds for an expensive operation. They ask you to raise funds from your friends and family too- you know it is going to be a long, hard ride for whoever is involved.

One of the more common diseases for which funds are often sought is Leukemia.  A terrible disease this is- it can cause your immune system to stop working, it can cause your clot-healing system to quit, causing you to bleed to death, or it can make you go completely anemic.

The last resort for the treatment of Leukemia is a bone marrow transplant. This process also involves one of the hardest aspects of dealing with the problem- the search for a bone marrow donor.

Unlike blood-donation, that we are all accustomed to, finding a match for bone marrow is not as straightforward. This does not simply involve a small range of blood types. This involves a genetic type match. This is, however, a technical issue. The second, and more significant problem, is the fact that we do not have enough people who have signed up to be prospective donors.

This makes it extremely hard to find a match. About 25% of patients find a match within the family. Which means the remaining 75% don’t. What makes this worse is the fact that there are only a handful of donors who have registered to become prospective bone marrow donors.

Why is this?

The primary reason is the impression that people have around the process that they have to undergo if they are found to be a match for a patient in the future. They believe the process of harvesting bone marrow to be a painful process, with a needle that pulls bone marrow out directly from the bone.

While this is one possible way to harvest the stem cells that are required for the patient, this method is falling out of favour. In fact, none of the donors who sign up for this drive will ever be asked to undergo this process.

What is currently the norm is a new process that is entirely painless. Well- about as painless as a normal blood donation. This is called a “Peripheral Blood Stem Cell” transplant.

Instead of pulling stem cells out directly from the marrow, you are given a series of growth factor injections over 5 days that cause stem cells from your marrow to be released into your blood stream. On the fifth day, you will undergo a process that is no different from platelet donations- one tube will withdraw blood from your body, have it processed through a machine to extract the stem cells you do not need and another tube will put the blood right back in.

This is it. You will never be called for a classical marrow extraction.

However, should a match be found, you should be ready to dedicate the time that is required for this process. The injections are straightforward- you go to a hospital and are injected as you would expect once every day for 5 days. The procedure on the fifth day is more involved and requires you to dedicate about four hours to the process. There is some flexibility on scheduling this, but as you can imagine, this will be at somewhat short notice.

The process of signing up is very straightforward. Drop by at our donor registration drive. We’ll show you a video about how this process works, talk you through everything involved, take any questions you might have and do a cheek-swab procedure which will involve rubbing the corners of your cheeks with sterile swabs (these are like earbuds, just sterile). We’ll pack the swabs up and send it over to be genetically profiled and saved over to a donor registration database. You will only ever be called in for the actual donation if a match is ever found. This may happen at any point in the future.

The tests will be carried out, free of charge to you, by DATRI, one of the three blood stem cell donor registries in India. You will also be given a complementary copy of the test result. 

If you are matched and called in, you can rest assured that YOU are saving someone’s life in a way that, quite possibly, no one else can. In the event that you are called in, the procedure will be carried out at a leading hospital in the city. In Mumbai, hospitals like Jaslok and Prince Aly Khan do this currently. 

The corollary is- we would like you to NOT come in and register to be a prospective donor if you believe you won’t come in if a match is ever found. Also, if you sign up as a donor and you would like to back out later, please inform the registry so that your name may be removed.

If you have any questions, please watch the video here (http://register.datriworld.org/Video/videoQT.zip) or email us at marrow@mumbaikar.me. You can also send us tweets at @MumbaikarME. 

The address of the venue is:

Pinstorm
Swati Building, Ground Floor,
B/h Kotak Bank, Off linking road,
North Avenue, Santacruz West,
Mumbai - 400054.
Office Contact # : 022-2648 8853

Edit: We've just added a Facebook event so we get an idea of how many folks are coming in.